Learning from patients at Sanford’s Rare Disease Summit in South Dakota

SIOUX FALLS, S.D. (KELO) – In the United States, there are around seven thousand rare diseases that affect 25 to 30 million people. This week researchers at Sanford are learning from scientists around the country about these diseases for the fourteenth annual Great Plains Rare Disease Summit.

They are also learning from people with firsthand experiences.

Fourteen years ago, Rob Long was at the top of his game playing football for Syracuse University and on track to be drafted into the NFL. But five days after his last regular season game, his world turned upside down.

“I was diagnosed with a rare and aggressive form of brain cancer,” Long said. “At the time of my diagnosis, I was given about 36 months to live. The five-year survival rate of my cancer, at the time, was 15 percent.”

He then left the field for a hospital bed where he spent 14 months undergoing brain surgery, radiation and chemotherapy. That grueling treatment helped him beat the odds.

“So I am now over 13 years with what I call ‘no evidence of disease.’ Not exactly in remission, there’s no cure for what I have,” Long said. “I still get scans every four months but have been very lucky and doing very well over the last 13 years.”

Friday he was at Sanford Health’s Great Plains Rare Disease Summit to share his story with researchers in Sioux Falls.

“I often say that the patients need to talk to the researchers and the researchers need to learn from the patients because in rare conditions, the people living with those conditions are the default experts,” Ben Forred with Sanford Research said.

It’s all in an effort to find more treatments for patients like Long.

“Even though it’s easy to think of South Dakota as fly-over country and not give it a first-line look, we are doing world-class research here at Sanford Research in our laboratories,” Forred said. “And making breakthroughs in things like rare disease.”

And Long has this message for anyone else facing a rare disease diagnosis:

“There’s a lot of people that are working very hard to support research and to support progress for all different rare diseases and diagnoses,” Long said. “But, for me, the biggest thing is that everyday is a blessing, take things one day at a time and do all that we can to get to where we want to go.”

Long is now the executive director of the Uplifting Athletes organization, which works to support people with rare diseases and raise funds for research. They also started the Young Investigator Draft , where they draft and fund researchers. Since 2018, they’ve funded over a million dollars in research grants for young rare disease researchers.

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